It's been quite a while since I've posted on here.
My symptoms:
- Upper left abdomen pain and ache (always there)
- Very low appetite
- Early Satiety
- Burping
- Severe Weight loss (60lbs lost)
- Inability to gain weight no matter how much food I eat
- Heart palpitation especially when moving around (POTS like symptoms)
- Severe Fatigue/Malaise
- Food sensitivities
I've been through literal hell with my health in the past year. I'm about to turn 28 years old. Currently I've been bed riddenly sick for the last 6 months but have had my terrible stomach issue since March 2020. With ZERO history of any health issues and suddenly in March 2020 Saint Patrick's day I get incredibly sick the day after my fiancée caught what we thought was a stomach bug. I went to a few gastro doctors and they really couldn't tell me what was going on and told to to wait for an Endoscopy. I asked my Primary doc for an H Pylori stool antigen test after being off Prilosec for 2 weeks and it came back negative. A few days later I decide to take matters into my own hands and order a PCR stool test called a GI Map which showed positive for H Pylori. Though at the time I was confused because the positive H Pylori number wasn't flagged as high so I wasn't sure if it meant anything. Finally had my endoscopy in late July 2020 and it showed nothing but no biopsy was taken. Now I was even more confused. I thought for sure I had Gastritis since my symptoms matched 100%. I had a colonoscopy in September which also showed nothing.
Symptoms were managed with taking a certain Spore based probiotic that made a massive difference in my symptoms in a good way. I started taking it in June 2020 and I felt 70% better pretty much all of summer 2020 then in late October I had a major flare up and was hospitalized for 4 days. I literally could not eat a thing and I was having intense palpitations and pain from my stomach. Felt very nauseated all the time. So while I was admitted to the hospital they ran every test they could and even did a second endoscopy. The endoscopy showed Chronic Antral Gastritis. "Finally!", I thought to myself. But the biopsy they took showed negative for H Pylori. Now mind you I was on 2 different PPI's when I had this endoscopy. So the doctors didn't know what to do and sent me some saying that all my tests were unremarkable and that I must've just been stressed... Like really? Now at this time I had lost a ton of weight (35lbs lost) but it was somewhat managed.
Fast forward to December when I'm still recovering from the symptom flare up I had in October and on the 18th of December I catch covid (just my luck). I get incredibly sick to my stomach, had ZERO appetite. Fevers on and off, and heart palpitations where going crazy. The virus literally only affected my stomach because I had no sinus or lung issues. I was so sick I literally would wake up feeling extremely anxious, like a sick body anxious feeling and when I had to get up to use the bathroom my heart rate would go from 80bpm to 150bpm almost instantly. I had insane fatigue and malaise. At the time I was just beginning to work with some functional medicine practitioner who believe I had SIBO (without any testing for it) and wanted me to do this really intense heavy SIBO herbal protocol. It came in the mail a few days after me getting sick so I asked him should I take all these herbs to kill SIBO while being sick with covid? He said "Yes! Just start". Huge mistake for me. I got even more sick and had to stop the protocol 4 days in. At this point I wound up losing a total of 60lbs which is insanely skinny for me and I was not overweight before I got sick.
Now I decided to stop working with this practitioner because I felt like he literally didn't know what he was doing and was just giving me a cookie cutter protocol he used for all his patients (which was basically what he was doing). I now decide to work with a functional doctor who wanted to treat everything he saw on my GI Map and he did tell me that H Pylori was a problem for me. But I couldn't tolerate the herbs he was giving me to kill off the pathogens. I worked with him for 3 months and all the gut healing supplements literally didn't touch my symptoms at all. He told me I was the worst case he had seen... Okay? Seems like these functional practitioners love to say that to their patients when they can't help them to get better. When he said that to me I decided to stop working with him. I felt he couldn't help me at all and he kept making excuses it seemed like.
Anyways, fast forward to a few months ago in April 2021, I go to the ER for my stomach for the 9th time in total. I told them my whole story and that I tested positive for H Pylori on a PCR stool test but no doctor took it seriously because it wasn't a conventional stool test. The doctors there were actually more helpful than any doctor, Naturopath or Functional doctor I've seen in the last year. He said "Yeah it sounds like you have H Pylori" and even my fiancée asked the doctor if my symptom progression matches that of someone who would have this infection if it went untreated. The doctor replied "Yes. The infection if untreated would only get worse and worse". So they prescribed to me the triple therapy. I waited to take it because I wanted to be fully prepared in case I had major side effects. I heard horror stories and I knew my gut was in real bad shape but I felt like this was my last hope. I had to get my life back. I was sick and tired of being bed ridden.
I took the triple therapy and it's was a breeze compared to what I thought was going to happen.
I am now 2 days post treatment and feel the same if not worse. My sleep has gotten so much worse. I keep waking up after only sleeping for 3 or 4 hours and feel severely exhausted all day. Also my stomach feels exactly the same which is very bothersome both mentally and physically. I'm beginning to doubt if the treatment worked or if this is even my issue.
My question to the experts on here is is this normal? I hear a lot of people feel better during or right after the triple therapy and I noticed little very minor improvements when taking the therapy like ever so slightly less stomach pain and my appetite was much bigger the first few days of the treatment. But overall I still feel so crappy. Is this to be expected and has anyone else on here have a similar story to mine? I was just hoping to see some positive difference after the antibiotics and I feel my body feels like it did before the treatment still.
Also as a side note my diet is extremely clean. I literally only can eat bananas, mangos, avocados, bone both and plain green beans with only salt for dinner.
I'm just concerned that this therapy didn't do the trick.
My triple therapy was the following:
Amoxicillin 2 capsules 500mg 2x day
Clarithromycin 1 capsule 500mg 1x day
Pantoprazole 1 capsule 40mg 2x day
Thank you for taking the time to read this
i have not idea how such a insidious and debilitating affliction is completely disregarded in the health care world - literally no doctor takes this seriously - if there’s something else going on I hope you find relief soon. This is really heart breaking